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Wednesday, October 17, 2012

Autism and Self-Injurious Behaviors

Self Injurious Behaviors. The magic trump card to stop down any conversation about autism. Three words loaded with emotion for anyone who loves an autistic. You want to protect the ones you love. In this case, the one you love and want to protect is also the very same person who is hurting the one you love and want to protect. It's heartbreaking and confusing. I get that. I promise.

Self injurious behaviors (SIBs) are often cited by those who view autism as a tragedy. Their child's autism causes him to engage in SIBs, and they would do anything to make the autism that causes their child to hurt himself for no apparent reason to go away.

Personally, I have been told I am "so high functioning" I cannot possibly understand, but I do understand because I am an autistic who engages in self injurious behaviors. I'm a head-banging, skin-biting, hair-pulling, mystery-bruise-getting autistic. I see SIBs from the inside out -- and while I can't vouch for other autistics, for me the awful part of SIBs is seeing the pain it causes those who care about me. This hurts more than any physical pain. It even hurts more than the root causes that drive me to SIB in the first place.

Self injurious behaviors are not the same as self harm. I feel self harm is a much more concerning issue than SIBs because it encompasses emotional torment (although there is overlap of self harm and SIBs in some cases). If you or someone you care about is involved in self harm, I urge you to seek help.

That said, I encountered years of professionals wanting to equate my SIB to self esteem issues, chiefly because of preconceived notions related to my gender. I have my frailties. I am overly sensitive and internalize criticism. I have PTSD related body image issues. My baggage has outgrown its suitcase and demanded a steamer trunk, but it's my baggage. I own it, I examine it, and I deal with it on a daily basis. My SIBs predate my baggage and will be around should I ever manage to leave that Trunk of Very Bad Things by the side of the road.

On a small scale, my SIBs are not that big a deal. I bite my fingers while trying to process phone calls. Under the table, my nails dig into my leg during a meeting. The actions are discreet, but it took me until my late teens to get my head around the concept that open self regulation via SIBs only left me more vulnerable to those who did not have my best interests at heart. These acts are not a lack of control. I am exerting some small control over my surroundings. Often, I can't avoid an overstimulating environment. Processing auditory input is difficult for me under the best circumstances. Throw in multiple voices, ambient noise, and fluorescent lights, and it becomes near impossible. Pain works as a filter. Enough pain, and the ambient noise dulls to a roar so that I may at least fake my way through a conversation without tears. These are minor acts that may result in a bruise or a little blood, but no real damage.

Most self injurious behavior stems from what I think of as forced passing attempts. This is a bit of a misnomer because I'm openly autistic, not passing as neurotypical. It's commonplace for even friendly environments to be sensory land mines, and for people who think they are sensitive to my needs to be miles off target. The world is full of occasions that feel like assaults. Sometimes willful, often inadvertent, and rarely within my verbal ability to act upon in real time, there are demands that I Fit In, Play Along, be a Good Sport, and not be Unreasonable. However, the inconvenient nature of my needs does not make them disappear. Those occasions damage me, chipping away at what is already paper thin defenses until there is nothing left.

Then I break, and the self injury gets ugly.

I take care of others. I try to take care of myself, but in reality, particularly as a parent, there are times when my needs go out the window. I schedule downtime, but life ignores my schedule. I have too many people whose needs must be met at once. I need to maintain composure and stay strong, but with no time to recharge, I become too agitated to properly self regulate. I fall into scripted speech that parrots verbatim criticism and verbal abuse from my past. These aren't my thoughts, but echolalia voicing my disgust as I hit my head over and over until everything stops. Self injurious behavior during a meltdown always seems to start with the delusion that I'm actually circumventing a meltdown. (I even have the words "Prevent Meltdown" written in my notes.) During, I know this is bad, really, really bad I know for days I will pay in headaches and neck problems, but there is no amount of will power that can stop it from happening.

The best support you can provide to someone with self injurious behaviors is an open mind. Don't dismiss possible triggers. If someone communicates to you that an environment or activity is overwhelming, even if that communication is not speech, pay attention to them. Plan ahead. Do not put the ability to handle an event or environment into a success or failure framework, because when you care about someone, you will put yourself in harm's way to not fail them. Remember that what may seem trivial to you, might be painful to someone else. Adapt to their needs, adjust your perspective, and accept them as they are.